Existential Distress After a Cancer Diagnosis

NCI's PDQ summary on adjustment to cancer quotes a formal definition of distress. It calls distress "a multifactorial unpleasant experience." That experience may be psychological, social, spiritual, or physical. It then sets the range. At one end are common feelings of vulnerability, sadness, and fear. At the other are problems that can disable. The list of disabling problems ends with "existential and spiritual crisis."

So this is not a soft add-on to cancer care. It sits at the far end of the same continuum as depression, anxiety, and panic.

PDQ also describes the moment of diagnosis. It says hearing the news generates a psychological and existential plight, or crisis. Then it adds a practical consequence. Heightened distress affects attention and how information is taken in. So the conversation itself may not land well.

PDQ is explicit that adjusting to cancer is not one event. It is a series of coping responses to many tasks.

It names six periods that commonly bring crisis. Initial diagnosis. Active treatment. The posttreatment and remission period. Recurrence. Ending curative treatment. And long-term survivorship. Each one, PDQ says, carries its own coping tasks and its own existential questions.

That structure explains something people find confusing about themselves. Feeling steady through chemo, then falling apart three months after the last dose, is not a coping failure. It is a different period with different questions.

PDQ describes a study of 52 adults receiving palliative care who were interviewed about how they handled their biggest stressors. Most used a range of strategies. But the strategies did not spread evenly.

Problem-focused coping means making lists, gathering facts, taking action. It was used less often for existential stressors. Emotion-focused coping was used less often for physical stressors.

That finding is worth sitting with. The habits that get a person through appointments and side effects are the habits that fit problems with solutions. Questions about meaning and mortality are not that kind of problem, which is why competence in one area does not transfer.

NCI's PDQ summary on spirituality in cancer care goes past the phrase "faith helps." Its findings are more specific than that.

Researchers use a scale called the FACIT-Sp. It separates two things. One is a sense of peace and meaning. The other is religiousness, or faith. PDQ reports a national survey of 361 paired US survivors and caregivers. The peace factor was strongly related to mental health. It was barely related, or not at all, to physical well-being. The faith factor was unrelated to either.

A study of 418 breast cancer patients pushed further. Higher meaning and peace went with a drop in depression over 12 months. Higher religiousness predicted a rise in depression. That rise was sharpest when the sense of meaning and peace was lower. PDQ grades this Level of evidence II. It reports a second study of 165 survivors, of mixed gender, with similar patterns.

In both studies, high religiousness was linked to increases in perceived cancer-related growth. So faith and peace are not the same variable, and they do not move together.

PDQ draws the conclusion directly: it is the sense of spiritual well-being, not religious involvement as such, that seems most related to psychological adjustment.

The gap between how common these questions are and how often they are raised is measurable.

PDQ reports a survey of cancer outpatients in New York City. A slight majority felt it was fine for a doctor to ask about religious beliefs and spiritual needs. Only 1% said it had happened. Patients whose spiritual needs went unmet rated quality of care lower. They also rated satisfaction with care lower. Both results held at P below .01.

Among 230 patients with advanced cancer in New England and Texas, 47% said their spiritual needs were not met by a religious community. And 72% said those needs were not supported by the medical system. Where support did exist, it was positively related to better quality of life.

One finding runs against expectation. PDQ reports that the medical care team addressing spiritual issues had more impact than pastoral counseling. The measures were hospice use, which rose, and aggressive end-of-life measures, which fell. In short, the oncology team raising the subject changed more than a referral alone.

In a large multisite study of advanced cancer, only 46% reported getting pastoral care visits. Those visits were not tied to the type of end-of-life care received. They were tied to better quality of life near death.

PDQ is careful here, and the care is informative.

A randomized trial compared a mind-body-spirit group against a standard support group for women with breast cancer. Both improved spiritual well-being. The mind-body-spirit group showed more effect on spiritual integration. PDQ grades this Level of evidence I.

A second study was not randomized. It put mindfulness-based stress reduction, with 60 people, against a healing arts program, with 44. Both improved positive growth. Gains in spirituality, stress, depression, and anger were significantly larger in the mindfulness group. PDQ grades this Level of evidence II.

PDQ also says plainly that published data on how support groups help with spiritual concerns is sparse. One reason it gives is that this part of adjustment has not been studied in a systematic way. Other approaches, it says, fall short in one of three ways. They have not been evaluated. They do not address spiritual issues head on. Or they never measured the effect on spiritual well-being.

Meaning-centered group psychotherapy appears in PDQ's reference list, not in its findings. So anyone told that a named program is proven for existential distress can fairly ask which trial that rests on.

PDQ's distress summary treats adjustment disorders as a DSM-5 category. The criteria are specific. There must be clear emotional or behavioral symptoms. They must cause marked distress or real impairment. They must follow an identifiable stressor, such as a cancer diagnosis. And they are less severe than a major depressive disorder.

It also cites a meta-analysis of 24 studies from seven countries. Those studies covered more than 4,000 patients in palliative care. Mood disorders and anxiety were common, and PDQ says they should be screened for and treated. The same analysis found it is also normal to carry no mental health diagnosis at all.

Both halves of that sentence matter. Existential questions are not evidence of illness, and they are also not a reason to skip screening.

Depression as a distinct, treatable condition is covered in depression and cancer. Cancer-specific mental health care is described in psycho-oncology. The other side of this ground is in finding hope and meaning.

• NCI PDQ: spirituality in cancer care, HP version
• NCI PDQ: adjustment to cancer, anxiety and distress, HP version